Updated: Oct 25, 2020
I was sitting on a plastic chair in a doctor’s office in Plano, Texas, waiting anxiously for the doctor to tell me whether he would agree to perform the surgery I needed to save my life. The whirr and punctuation of my portable oxygen machine pierced through the silence while I awaited the verdict. This thoracic surgeon was soft-spoken and humble, different than most of the other cardiothoracic surgeons I had met. He discussed my tests, pulled out a model of the heart and showed me what he would do. But would he do it? Would he schedule the surgery? I knew from past experience with surgical consults, just because the surgeon talks about it, agrees that you need it, and says they will do it, doesn’t mean they will actually follow through. You need a date, I learned. An actual surgery date on the calendar. Then, hopefully, you will be assured the surgery. But in 2020, the year of COVID, even then, the date could easily be moved or canceled altogether.
Nearly four weeks earlier, I was sitting in my bedroom, blinking back my tears. But there were too many; I couldn’t hold them back if I tried. Just two days earlier, a nurse from the cardiothoracic surgeon’s office in Chicago who had agreed to perform the robotic pericardiectomy informed me that he no longer would after discussing the case with Mayo Clinic physicians. On this date, five days after being hospitalized for symptoms of decompensated heart failure (cardiac ischemia or lack of blood flow to the heart), I had just received a letter from my local cardiology group that they would no longer provide any cardiac care. I called them and talked to their office manager, demanding an answer as to why. After all, during the my hospitalization five days earlier, it was their own cardiologist who refused to see me to discuss medications that we could try to better control the worsening, frequent chest pain. My portable oxygen, bootlegged off Amazon since no doctor would order it for me, was my only saving grace, as oxygen along with nitroglycerin, were typically able to control my symptoms to keep me out of the hospital. My diagnosis, recurrent constrictive pericarditis, was obvious to me as a young patient who had already had open heart surgery for the condition that had been successful 20 months prior. But these doctors refused to look at my imaging, the cardiac catheterization testing, to even try to come to the same conclusion. So instead I was prescribed medications either contraindicated for this diagnosis or meds that had sent me to the emergency room in the past due to heavy side effects. Instead of discussing the options with me face to face, the nurse told the physician that I refused the medications, and I was offered nothing else.
Now I was the bad patient. Being cut off from cardiac care from this group should have been no big deal, but they covered most of the local hospitals. Even Dr. Westfall, the local ER physician who knew my history well, told me not to come back, because the cardiologists were refusing to admit me when I needed the help. Another local hospital employed four cardiologists who had misdiagnosed and refused to help me two years earlier. There were two cardiology groups left to try, so I focused my phone calls on them to see if they were accepting new patients. All I really needed locally was a re-fill on my nitroglycerin, and a cardiology group willing to admit me to the hospital when I decompensated and couldn't control my symptoms with the tools I had at home. I was going through the nitro like water, because the chest pain came on so frequently throughout the day. I had already lost 25 pounds, because my heart couldn't handle both eating and providing oxygen to my body at the same time. Eating always brought on symptoms, so I was afraid to eat at all. Same for drinking. By then, the nitro and my portable oxygen were the only things keeping me from being permanently hospitalized. Anything more than an hour or two of sedentary activity out of bed was a recipe for disaster.
After successfully making the appointment, and then calling and negotiating with the former cardiology group to continue to refill my nitro prescription until that appointment, I sat back and analyzed my situation. It wasn’t good. It was dire, in fact. I had one appointment scheduled in Philadelphia with a robotic surgeon with whom I had communicated by email. He said that he could do the procedure I needed robotically, but something in the email left me feeling like he was hedging. After reading and re-reading the email, I couldn’t figure out why. But that was it. It was the only appointment I had after contacting a list of 20 possible robotic heart surgeons.
Just then, my six-year-old daughter, Addy, happened to climb the stairs to my bedroom. She saw the tears in my eyes and asked me what was wrong. I held her and we sobbed uncontrollably together as I realized I had no control over my fate. My life was hanging in the balance. I couldn’t lie and tell her that everything was going to be all right, because I didn’t know that it would be. I had to be honest. We would hope and pray for the best. That this doctor in Philadelphia would save mommy’s life. But I didn’t know if he would, or could. We hugged and cried together there in my bedroom. We cried out to God to intervene. It was Valentine’s Day, but this day of love fell far short in consoling my tired and battered heart. I begged God to grant me just one shred of hope, so I could make it through another day.
High in the air in the dark of night on the way to Philly one week later, I held my breath. This was my first flight ever with portable oxygen, and my machine kept showing error messages, shutting off, and having to be re-started. I was all alone in my window seat, glancing anxiously at my pulse oximeter, watching the numbers count backward from the safety of 96%. As the numbers went down 95, 94, 93, 92, 91, 90, my heart rhythm became ragged and uneven, pounding and fast. My body was trying to compensate, but unable. The lightheadedness set in, but I tried to appear calm so other passengers wouldn’t notice me frantically pressing the restart button on my oxygen machine over and over again. What if it triggered an arrhythmia on the flight? I pulled out my Kardia and noticed many more PVCs than normal, confirming what I was feeling. I prayed my machine would kick in, and give me the oxygen I so badly needed. I did not want to cause a medical emergency and force the plane to land. Would the other passengers even notice if I slumped down in my seat, unconscious? There was no one in the seats next to me. After several minutes that felt like an eternity, the machine kicked in once again. I breathed a sigh of relief.
I looked out the window into the black of night and caught my reflection. How did I get here? I asked myself. How did I go from a three-sport athlete in high school, a marathoner during my young professional career, to this, desperate for enough oxygen to take my next breath? So dependent on oxygen just to prevent a medical emergency at 37,000 feet? The face peering back at me in the glass was as unrecognizable as my life had become. I prayed hard in desperation that I would make it to Philly; that I could just stay there until surgery. No more risky travel. That soon all of this would be over.
The next morning felt like I was living out a scene from a movie script. Except it wasn’t. This was my life. I had been invited into a large physician consulting room, complete with video monitors attached to the wall, my heart echo and MRI images on full display for all to see. The robotic surgeon had spontaneously invited the head of their cardiology department, an old colleague of his, into the consult. They were discussing my case- my history, the imaging, the heart cath, my function. It was an emotion I had never seen before in a consult. The surgeon seemed, well, bothered. He told me he believed me and my symptoms. To which I nearly cut him off to say, “I don’t need consolation. I 100% know that I have constrictive pericarditis. I don't need re-assurance; I need action. I’m at the max level on my portable oxygen, and I could barely get here. I have responsibilities at home, my kids- including a six-year-old, my employees who will lose their jobs. I can’t let them down…” my voice broke in sad desperation. A nurse who had been lingering across from me wiped her eyes and quickly left the room. After debating for more than an hour of back and forth on my case, I finally understood. The surgeon had not done the procedure on someone who had previously had open heart surgery. He was worried he wouldn’t be able to complete the procedure robotically, and if he had to open me, he couldn’t assure me that it would go well, given my three previous chest surgeries. If my sternum was stuck to my ventricle when he opened me up, I would die on the table.
That surgeon had left me in limbo. He definitely did not commit to doing the surgery. And it began to sink in that you really don't want a surgeon performing a tricky surgery when he is not confident of the result. The head of cardiology had been emailing me essentially just to provide moral support. God bless him for that. I consulted my list of doctors names, phone numbers, and locations one last time. Every name had been crossed off, including all of the names I had gathered from the da Vinci robot sales rep who knew which cardiologists were possibly performing the surgery I needed across the country. Most on the list had dropped their robotic surgery programs, or they had no experience with my particular condition and the procedure that I needed. Glancing through a typed up list I had made of the doctors to whom I had sent my records, there was one down in Plano, Texas that had not gotten back to me. This usually meant they either didn't perform the procedure or didn't want to perform the procedure on me. But I had to call, just in case. Turns out, the doctor who had received my paperwork didn't do the procedure I needed, but his partner did. The records were sitting there, but no one had bothered to call me to set up a consult. But just getting the consult scheduled seemed like a miracle.
Fast forward to that small consulting room in Texas three weeks later. After explaining the procedure and that he couldn’t guarantee any improvement after surgery, unexpectedly, this thoracic surgeon turned to me and asked, “Do you want to proceed with the surgery?” I paused for just a moment, and said, “Given the test results, the success of my previous surgery, and my current condition, I can’t imagine this surgery would not be successful. So yes, let’s do it.” The doctor and his assistant stepped out of the room to find a date on his surgery schedule. I was surprised by the immediate tears that sprang to my eyes as I looked toward heaven and let out the biggest sigh. How long had I been holding my breath? I hadn't noticed. I lifted my clasped hands towards the ceiling in prayer and disbelief. But really, what do you say when someone has agreed to save your life? To the surgeon? To God? As verbose as a writer can be, I had no words.
An hour later while sipping hot chocolate at a nearby Starbucks, I attempted to absorb what had just happened. This was it! My life would be saved! Such wonderful and truly amazing news! And what relief! Emotions of shock, awe, gratefulness, and anticipation overwhelmed me. Did that really just happen? Was it all a dream? Again, words escaped me as I attempted to pray right there at the Starbucks table to express to God my appreciation for his mercy, grace, and hope that He so richly provided. So instead, I asked God to listen to my heart overflowing with joy and thankfulness. I would live to see my kids into adulthood. My story was not ending.
I turned to music, as it is such a big part of my heart and soul, and the lyrics to the song Reckless Love, by Cory Asbury, were shouting from my heart to God. I listened to the song over and over again, relishing the words and letting them pour over my soul, wiping tears of joy from my cheeks.
Before I spoke a word, You were singing over me You have been so, so good to me Before I took a breath, You breathed Your life in me You have been so, so kind to me
Oh, the overwhelming, never-ending, reckless love of God Oh, it chases me down, fights 'til I'm found, leaves the ninety-nine I couldn't earn it, and I don't deserve it, still, You give Yourself away Oh, the overwhelming, never-ending, reckless love of God, yeah
When I was Your foe, still Your love fought for me You have been so, so good to me When I felt no worth, You paid it all for me But You have been so, so kind to me
And oh, the overwhelming, never-ending, reckless love of God Oh, it chases me down, fights 'til I'm found, leaves the ninety-nine And I couldn't earn it, and I don’t deserve it, still, You give Yourself away Oh, the overwhelming, never-ending, reckless love of God.
In that moment I pondered, how do you thank Someone for giving you everything, from the air you breathe to the very pulse in your wrist? For rescuing you from death when you had no one else to turn to, no other options. That same Savior who so many years ago in a humble Sunday school classroom saved my soul for all of eternity at the tender age of five. Knowing I did not deserve it then, and I certainly hadn’t done a thing to deserve such mercy now. This was the very essence of grace and love sent from heaven above to an undeserving human; the result was pure joy. And nothing and no one can ever take that away.
#hopefloats #purejoy #recklesslove #DoctorHealThyself
Jill Murphy is a Doctor of Physical Therapy and founder of MotionWorks Physical Therapy and an advocate for patient-centered care. A Christian mom of three, she survived a seven year journey through the broken American healthcare system in search for an answer to a heart arrhythmia that appeared during pregnancy. A stroke, open heart surgery for constrictive pericarditis, and several other surgeries later, Jill is telling her story of unfailing resilience in her upcoming book, Doctor Heal Thyself.
Having grown up on a dairy farm 40 minutes from Lambeau Field, Jill is an avid Green Bay Packers and Wisconsin Badgers fan, and is up for any activity with her three children, including walking, biking, throwing the football around, hiking in scenic locales, gardening, playing piano, singing, and coaching a middle school basketball game or two.